Perspectives, Sarcoma

The Love of This Momma in My Own Suit of Armor

9 months and 25 days ago my life was forever changed; it was the day I found out that one of my babies was diagnosed with cancer. The diagnosis was a very rare and aggressive cancer usually found in children or young adults called Ewing’s Sarcoma. For those of you who have had a child with cancer or any other serious illness, you know what I’m talking about: the tears, the pain and the frustrations that we go through.

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The love of a mother has for her child is like no other; it is a love that can’t be explained. A love that makes you wish you could take all of the sickness and pain away so that your child would be ok. But unfortunately life doesn’t work that way; you can love your child with everything you have, but you can’t take away their pain. You can only endure it with them, love them and never let them feel that they are alone.

In Dr. Mo’s clinic, Zach’s nurse, Wendee would tell me to put up my ‘armor’ when I was having a bad day. That thought really spoke to me because as moms we wear many suits of armor on a regular day, yet the armor changes when you have a child with cancer. Some days my armor held my heart in my body or some days my armor held me together because everything inside of me felt like it was coming undone. Some days my armor kept my knees from buckling beneath me and kept me from falling apart.

However, this past year I’ve also found that I have another suit of armor and that is my faith in God. Over the past nine months we have experienced more emotions then we thought were possible for one human being to endure.

This journey has made me see so many things so differently: remember to be kind to others, surround yourself with loving people, and please donate blood! I always knew life was so precious, but really didn’t appreciate the fact that the rug could be pulled out from under your feet in a blink of an eye. So, my armor has really become a way of dealing with all of the emotions of Zach’s illness and his recovery.

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One night on our way home from a long stay at the hospital the song “Life Ain’t Always Beautiful” by Gary Allen came on the radio. So many things in life aren’t fair, but so many more things are so amazingly beautiful and we are truly blessed. Life ain’t always beautiful, but it’s a beautiful ride.

Team Painter is still standing together, still standing strong. Zach is a true warrior and my rock star along with his brothers. This is one proud Momma wearing her own suit of armor!

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Update: Zach had scans in late July and the results came back free of cancer.

 

 

 

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Perspectives, Sarcoma

College Student to Caregiver

July is sarcoma awareness month so I’ve invited others affected by sarcoma to guest blog throughout the month. The last blog of the month comes from Moleigh Ryther, girlfriend to Nik Jiruska, Ewing’s Sarcoma survivor. Nik blogged earlier this month and now Moleigh shares her story as a caregiver to a loved one with cancer.

Caregiving is hard. Everyone knows it. Well…everyone should know it. But you don’t really know what it’s like until you are a caregiver. Many of you probably read Nik’s post on Dr. Mo’s blog about his journey with Ewing’s Sarcoma. I am Nik’s girlfriend, Moleigh Ryther, and I’m going to parallel his experience with my own as one of his caregivers.

April 2013, Nik started complaining about a pain in his left leg occasionally. I remember him referring to it as a “growing pain” one time when we were doing homework. I guess he was kind of right because something was definitely growing. But at the time, I thought it was nothing. Being the hard-working student that he is, he pushed through finals despite the aggravation. After completion of his semester, he tried going to a chiropractor thinking maybe he had a pinched nerve. Nik gets very stressed out during school so I thought it was maybe even stress-related.

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Days later, Nik made his first trip to the ER: no conclusion. Second trip to the ER: no conclusion. Butterflies began to develop in my stomach. By his third trip to the ER, it seemed like hornets had taken place of the butterflies. We were supposed to watch a movie at his dad’s that night. Nik called me as I was doing my makeup and I could sense his pain through his voice. I immediately drove to St. Luke’s. I think it was about three o’clock in the afternoon. As Nik cringed with every slight movement of his leg, my stomach tightened and tightened. After many hours, Nik was taken back for an MRI. As I think back to the moment that the doctor returned with the results, the memory is a weird mixture of clear and foggy. I picture our faces and the room clearly but the moment the words “bone cancer” were uttered, everything becomes foggy and in slow motion. It felt like time stopped. I didn’t know what to do or say. I was in shock. I just remember Nik and I locking eyes and me lunging for him. Nothing the doctor said past that point was heard or remembered. By that time it was about one o’clock in the morning and we were sent immediately to the ER at UIHC.

It’s an awful, awful feeling to know that the one you love has “bone cancer” but an even worse feeling is wondering how bad it is. Fast-forwarding past final diagnosis of Ewing’s Sarcoma and into his biweekly hospital stays, we desperately searched for things to consume our minds within the confines of his hospital room. When it comes to hospital floors for chemo treatments, you have a pediatric floor and you have an adult floor. Nik was 20 – too old for pediatrics and about 30-40 years younger than the average patient on the adult floor.

Being a young adult with cancer puts you in a very underrepresented group with very different challenges. Most 20-year-olds may worry about school, their weekend plans or maybe a fight with their boyfriend/girlfriend. It’s a part of your college years, what most refer to as “the best years of your life.” You discover who you are. You’re allowed to be selfish and mistakes are expected. All the while, you’re attempting to gain independence from your parents. Being a young adult caregiver shares many of the same challenges. However, I in no way want to measure my experience alongside Nik’s. Although we lived it together, we experienced our own set of challenges.

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Nik stayed in Iowa City with the hopes of taking classes during treatment and I was committed to helping him along the way. I created and updated Nik’s CarePage to keep friends and family involved. It was evident that Nik’s supporters reached far and wide, but that small studio apartment on Clinton Street felt so isolating. During his healing time after surgery in which he could not walk, I would rack my mind for things I could do or say to lift his spirits but ideas were not there. It’s not an easy task to balance the roles of caregiver and girlfriend in addition to the roles of nursing student, Cambus driver and sorority member. Being in his apartment in downtown Iowa City, we would lie there trying to sleep as we heard the ruckus of our peers outside. I found myself snapping at friends who would complain about frivolous pursuits in their lives. Let’s face it, many college students complain about homework, tests and commitments – I had no tolerance for that. It was unfair of me to expect my peers to understand what Nik and I were going through yet it felt impossible to restrain those feelings of bitterness.

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Despite all the negativity that comes along with a cancer diagnosis, I believe that you can find the good in anything. Here’s just a short list of the good that came out of our experience:

  • Nik and I got to spend the whole summer re-watching seasons of Dexter together.
  • The nurses and staff on 4JP and the outpatient clinic were so much fun.
  • Nik had an excuse to eat whatever he wanted and I liked to think that I did too.
  • My eyes were opened to what’s truly important in life and this continues to guide me in times of stress.
  • Dr. Mo created a relationship with Nik that is unlike any patient-doctor bond.
  • Being reminded of the good in the world through acts of kindness.
  • I feel very close to his parents and family after spending so much time with them.
  • Nik and I truly do know each other at our best and absolute worst. Nik can tell you first-hand what I look like after 5 days sleeping on a cot in the hospital with no toiletries. Spoiler: Not pretty.
  • Dr. Miller is easy on the eyes. Am I allowed to say that?
  • Nik’s Head Shaving party was a blast and we raised a bunch of money for The University of Iowa Dance Marathon.
  • Nik’s “You’re the Man” video raised so much awareness for Ewing’s Sarcoma and was so inspiring to put together.

It has been about eight months since Nik’s treatment ended but our journey continues as we head to Italy in a couple of weeks to celebrate all that we have to be thankful for. My boyfriend is the most amazing person in the world and he has an 11-inch scar to prove it.

-Moleigh Ryther

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Perspectives, Sarcoma

Nik Jiruska: Ewing’s Sarcoma Survivor.

July is sarcoma awareness month so I’ve invited others affected by sarcoma to guest blog throughout the month. Today’s blog comes from Nik Jiruska, a young man who battled Ewing’s sarcoma. Enjoy.

My name is Nikolas Jiruska and I recently finished receiving chemotherapy treatments to fight a rare form of bone cancer called Ewing’s Sarcoma. This disease primarily affects children and adolescents, but I was diagnosed at the age of 20. It was a long journey, and I am fortunate enough to be able to say that I am now back at The University of Iowa nine months later and enjoying life more than ever. Now, let’s go back to April 2013 where my journey began.

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I started feeling pain in my left hip towards the end of April. It was a fairly mild pain and it would come and go every so often. I thought it might have been a pulled muscle or a pinched nerve. This persisted for a few weeks before the pain started to get worse. Fortunately, the intense pain waited until I was done with my final exams for the spring 2013 semester. I went to the emergency room at St. Luke’s Hospital in Cedar Rapids the first time the pain in my leg became unbearable. It started in my hip and would send deep, pulsing pain down my entire leg. They drew blood and took X-rays of my back and hip, but were not able to draw any conclusions from this work. I received some pain medicine and was told to keep monitoring my leg.

The pain continued to grow worse and worse from then and I went to the emergency room two more times before I finally received an MRI. The ER doctor who was tending to me knew immediately that I had cancer after looking at the results of the MRI. This was the last thing I ever expected to hear, especially at age 20. The doctor arranged for me to go to The University of Iowa Hospital and Clinics immediately. My parents, girlfriend, and I left St. Luke’s and went straight to Iowa City in the middle of the night.

After a few days of various tests, I was officially diagnosed with Ewing’s Sarcoma on June 4th, which also happens to be my mother’s birthday (happy birthday, right?). Although we had the official diagnosis, there was still a lot to do to find out if the cancer had spread anywhere else. After the initial blow from this horrifying diagnosis, we only received good news from then on. All of the tests revealed that the cancer was localized in my hip and had not spread to the brain, lungs, or bone marrow, which are three locations that this could likely spread to.

At this point, I started my chemotherapy treatments and talked with my oncologist, Dr. Mohammed Milhem (just “Mo” for every one who knows him), to get an idea of what the next few months would entail. I would receive chemotherapy treatments every two weeks, alternating between two and five-day treatments. I would have five rounds of chemotherapy and then have more scans to see how it reacted to the treatment. Shortly after, Dr. Benjamin Miller would perform surgery to remove the tumor. We thought I would have to receive a hip replacement, but there was a chance I could also have a bone allograft surgery depending on how the tumor reacted to the treatment. After the surgery, I would go on to receive nine more rounds of chemotherapy for 18 weeks.

It took me a few rounds of chemotherapy before I started to feel the effects. One of the effects that was the most difficult for me to grapple with was losing my hair. It was sort of my trademark and was a big adjustment in my life. However, a small price to pay, considering it would grow back eventually. Some of the other side effects I felt throughout my treatments were lightheadedness, fatigue, and nausea.

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The first five treatments flew by much faster than I had anticipated, and all of the sudden it was August. I had my scans and my cancer had reacted very well to the chemotherapy treatments, shrinking the tumor a lot. Dr. Miller determined that I would be able to have the bone allograft surgery. There is a longer recovery time with this route, but long-term, it would be better for my leg in terms of returning to normal functionality. Dr. Miller and his team performed a successful surgery to remove my tumor on August 21st. He determined that 95% of the tumor was dead and had been removed with clean margins. This was a big step out of the way, and everything was downhill after that.

Perhaps it is only at this point in time that I can say that it was downhill after surgery. At the time, life was very difficult. I was not able to put weight on my left leg for three months because my bone had to heal around the graft, and when you are dealing with healing bone, everyone knows this is a very slow process. This lack of mobility along with starting my final nine rounds of chemotherapy made my choice to withdraw from school for the fall 2013 semester pretty easy.

I do not know how I would have made it through those three months without my parents and girlfriend. They went out of their way to do things for me much more than they needed to. I am so grateful for them and what they did for me during this time, and during my whole fight. I primarily spent this time going back and forth between my apartment in Iowa City and my parents’ houses in Cedar Rapids, when I was not at UIHC for treatments. This was an uneventful time, to say the least. My days were filled with watching movies, Netflix, and playing videogames. It was the lazy time you fantasize about when you are living a normal, busy life, but believe me when I say this lifestyle gets old very fast.

After beating five video games and watching countless movies and TV shows, my three-month appointment with Dr. Miller arrived on November 14th and he gave me the OK to start bearing weight on my left leg. Goodbye, walker and crutches. I started practicing to walk immediately when I got back to my apartment after that appointment. It was an awkward and exciting feeling. I had, and still have, an overwhelming feeling of thankfulness that I have the opportunity to walk, because not everyone is fortunate enough to be able to keep their limb when they are diagnosed with Ewing’s Sarcoma.

At this point, life was getting pretty good. I was walking again and only had four more chemotherapy treatments to go. However, my last few treatments were delayed because I was really feeling the negative effects of the chemotherapy and I was not meeting the required blood counts to be able to start the next round of treatment. I had to receive a handful of blood transfusions during this time to help meet the blood count requirements. Thinking about it now, these setbacks were not a big deal at all compared to what can happen when receiving chemotherapy treatments. At the time, though, it seemed awful because I was so anxious to finish and get on with my life.

Finally, January 3rd came around and it was time to go in for my final chemotherapy treatment. Unfortunately, this had to be a five-day treatment. The longest five days of my entire life, I think. My girlfriend stayed with me every night in the hospital, as she did during my treatments in the summer months, which made everything a lot more bearable because she is a very comforting person to be around. The wonderful nurses of 4JPE in UIHC presented me a beautiful cookie cake to congratulate me on my final day. I then returned to Cedar Rapids for a couple of weeks of rest, relaxation, and relief before I would return to school. I returned to UIHC three weeks after I completed chemotherapy for a bone scan and CT scan to make sure I was clean. Sure enough, the scans were clear. We were all optimistic that this would be the case, and it was truly a wonderful feeling. Time to get back to life.

I am sitting here writing this now and I do not feel bitter about having to have endured this experience at all. I have only to be thankful that I survived it. Also, as odd as it may sound, I am sort of thankful that I went through this experience because I learned a lot about myself during this time and it strengthened my relationships with those closest to me. I want to conclude my story by saying that you should never overlook any pain or odd feeling you may experience in your body. I did not do this and the early detection of my cancer may have saved my life. I also want to give thanks to my wonderful caregivers throughout this journey, including Mo, Dr. Miller, my parents, my girlfriend, and the nurses of 4JPE, 4JPW, and 2RCW.

-Nik Jiurska

Nik’s girlfriend made a surprise video for him at the completion of his chemotherapy. She got many of Nik’s friends and family involved in this video, including a celebrity or two. Watch the story from KGAN News Channel 2 and then watch the video from his girlfriend here.

 

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